Sarah’s List Exchange Experience
Part I—Family Dynamics & Informed Consent
I was immediately drawn to the paired kidney exchange program as a way to help my mother avoid dialysis and survive her chronic kidney disease (“CKD”). The concept of helping two patients with the act of donating one kidney greatly appealed to me. “Why not do it?” was my attitude.
When I first described the paired exchange program to my mother, she dismissed it. She had been [End Page 26] relieved to hear that I was not eligible to donate to her and simply refused to discuss it further. Being rather stubborn, I sent her copies of all the paperwork anyway and so began my steady campaign to become a kidney donor.
With my subsequent activity in living donor communities, I’ve learned that many families expect other family members to step up and donate a kidney to their kin, and medical teams don’t question it. It is the “non–directed” donors who are treated so skeptically by transplant professionals—the doctors can’t seem to understand volunteering to give an organ to a stranger, and they underestimate the fact that many relatives are coerced, bribed, or shamed into donating their kidney. The medical teams adopt too readily the “kin must be willing to help save a family member’s life” presumptions without properly considering the interfamily dynamics at play.
Particularly when the kidney patient has a bullying or abusive relationship with the potential donor, or history of drug abuse or neglect (failure to take necessary medicines or follow the renal diet), the potential donor may have many reasons to want to decline. I cannot count the number of times I’ve read on–line posts from these potential donors seeking counsel and reporting that their physicians, as well as family members, are instituting short deadlines to decide whether to save such a recipient’s life or send him to his death. That is a serious guilt trip that the mental health and social worker members of transplant teams do not always take into consideration.
In contrast, I needed no coercion—I wanted to donate my kidney. After reading all of the donor materials and independently researching the risks of nephrectomy, I believed the chance of complications was slight. I thought my consent was informed. Yet, throughout the donor evaluation, I blindly relied upon the transplant team’s assessment of my exams and lab results and eagerly heard what I wanted to hear—that I was eligible to donate.
This became clear at my four month post–op check up when I had a high creatinine report. Recalling that, post–surgery, I was kept in the hospital days longer than expected while waiting for my creatinine to come down, I finally reviewed my pre–surgery lab numbers. The nephrologist had put me at 0.9 creatinine, the lowest of all my pre–donation readings, although some of my lab reports listed above the “normal” range—as high as 1.7. I didn’t ask for these numbers or question their meaning during the evaluation, and no one ever told me that I was near the cut–off for creatinine levels. I took the transplant team at face value; is this “informed?”
In hindsight, there was probably nothing that I could have learned to dissuade me from moving forward with the donation so long as the transplant center agreed that I was eligible. I was aware that there were risks of complications, but felt that my chances of experiencing them were no higher than the chance of getting into a car crash. It was my Mom who hesitated to put my life at risk for the sake of her own health. She shared with me that she had lived a good life and, if she died or was stuck on dialysis, that was fine. She didn’t want to risk her granddaughter growing up motherless and she was concerned about whether my daughter would ever need a kidney.
My only hesitation came from thoughts of my young daughter. But because my mother’s CKD was not inheritable and I was healthy, the chances of her needing a kidney one day seemed remote when compared to my mother’s immediate need. And it was and still is important to me that my daughter gets to enjoy many years with her grandmother! I’m also blindly optimistic that a donor will be found should my daughter ever need a kidney.
A medical advance allowed me to break my mother’s intransigence. When her surgeon learned that I was a willing Type A donor, he suggested that I may be able to donate to my Mom via plasmapheresis, a blood–filtering process that replaces antibody–carrying plasma with albumin and a saline solution, and my mother conceded to allow me to be tested. Although I was not the right subtype, once my mother had entertained the concept of my donating my kidney to her, I found the chink in her armor. I was finally able to convince her of the benefits of donating for her through a paired exchange program. [End Page 27]
Part II: Waiting & The Problems With Type O
I was cleared to donate and we entered the paired exchange database. In order to find a compatible “pair,” we needed to be matched with a willing donor who, although Type O, was incompatible to donate to their Type A recipient.
I am not aware of any systematic efforts (or haphazard ones) to educate willing and compatible Type O donors about paired exchange programs. Such donors are allowed to donate directly to their intended recipient, no matter what the recipient’s blood type even though their organs are uniquely suited to a select subset of kidney patients. Consequently, the only reason for a Type O donor to be included in the paired exchange database would be if he was a non–directed donor or his intended recipient was sensitized against his antibodies (as by a prior transplant). Both of these instances are unusual.
While waiting, I was a rollercoaster of naïve optimism that we must find a match—it was our only hope, after all!—and pessimism that there would never be any Type O donors in the database. After the first month’s database run was complete without any match found, my emotions tended toward the pessimistic side. I grew to resent Type O donors for giving their kidneys to non–Type O patients.
One month after entering the database, my mother had emergency surgery to insert a catheter access in her jugular and begin dialysis. Ultimately, she kept that “temporary” catheter in for ten months, constantly putting off the second surgery to create a permanent access while we waited to win the transplant lottery.
Part III: The List Exchange & Playing God
For certain medically–qualified kidney patients, the New England region allows for “list exchange” if no living pair materializes. A list exchange allows an incompatible but willing donor to help their desired recipient get a deceased donor kidney off the wait list more quickly. The benefit is that, instead of the five year waiting time, the recipient’s time on the wait list may be as short as weeks after the donor transplant.
The commonly raised moral question is whether the exchange is medically equal: I give up a living kidney and my Mom gets a deceased donor kidney. Most data suggests that transplant patients have better outcomes with a living kidney. That issue was relatively easy for me to deal with. If I had been unwilling or unable to donate, the best my mother could have hoped for would be a deceased kidney. So the time off dialysis and not having to create the fistula easily outweighed the difference in quality of organ. (Of course, neither I nor my Mom had any major complications, so it remains easy to feel good about that decision!)
Without a living donor, families of patients on the wait list are in the uncomfortable position of waiting for some other family’s tragedy to bring a miracle to their own. This seems to create a chronic sort of waiting for death that, because of the lack of control over the timing, is somewhat depersonalized from the tragedy of the donor. In contrast, with the list exchange, once the donor’s nephrectomy has occurred, the wait for a deceased kidney becomes acute and morbid. For the four weeks between my donation and my mother’s transplant, I’d wake up every day and proactively wonder if, and almost pray for, someone somewhere to die in just the right circumstances to be able to give my mother an organ. That is a terrible feeling, and it really isn’t right to wish for that, ever.
The most troublesome question for me had to do with the folks on the wait list. I do not know how many individuals who lack willing donors my Mother “jumped” in line. I don’t know their health, how long they’ve been waiting, or why they don’t have any willing donors. I don’t know if they are told that they got jumped in line. Particularly for those Type O patients, it seems logical that they would be more likely than other blood type patients to be “jumped” on the wait list by the lucky recipient in a list exchange. Very often you hear that people die while on the wait list. I always cringe when I hear that, because I have no way of knowing if the particular timing of my donation and my Mother’s transplant ultimately played a role in one of those deaths. That really bothers me.
This angst is not just hindsight. I had thought about these aspects of the list exchange well before [End Page 28] we did it. But I’m not altruistic at all: I wanted my daughter to have more time with her grandmother healthy. I wanted to prevent my Mother from having another surgery to put in the fistula. I was quite willing to risk this harm to another in order to help my Mother get off dialysis and back to a more normal life. I will always have to live with that knowledge.
I can bear this because I donated my healthy kidney to a recipient who did not have a willing donor. Although I’m told that he was at the “top of the wait list” I don’t know any other information about him. He may have been one of those soon to die on the waitlist absent my donation. I find some solace in that. And perhaps it is better that I don’t get to meet him. If I were to find out that he was doing fine and could have chugged along on dialysis for five more years without major health risk, or if he was one of those dead–beat types who was such a scumbag that his own family didn’t want to donate to him, I might go back to wondering about those Type O recipients dying again.
Part IV: Happily Ever After
I really feel like I am living a charmed life. I have had no major complications from my nephrectomy, and my mother’s new kidney is doing fine giving her that new lease on life that we all hoped for. I am truly blessed.
But through this process, I’ve become aware of many stories of living donations gone wrong. I have become active in on–line forums of living donors and been an in–person donor buddy to potential donors all of whom have shared some of their own stories with me. Although their stories are not my story, it is part of my personal experience that I have learned about the broader range of donor experiences. I am also very much aware that there is no consistency in follow–up across transplant centers, practically zero long–term follow–up, and very few scientifically valid studies on donor outcomes—it is impossible to give “informed” consent when so little is known about the long–term outcomes.
With all of this information, I feel almost guilty when conveying my positive, complication–free story. I am really conflicted about whether it is right to encourage living donors when the medical establishment refuses to treat the medical and emotional health of donors on parity with that of recipients. Yet, as a donor and child of someone with chronic kidney disease, I feel uniquely responsible to advocate for increasing living organ donation. I know the real, life–saving benefit of living kidney donation—I feel it every time I see my mother’s living face.